Myotubular Myopathy is a rare muscle condition, which affects mostly boys at birth, and sometimes an even rarer form develops later in life affecting both boys and girls. It causes profound muscle weakness. Most critically it affects the muscles that control breathing and swallowing and is a constant threat to life - a simple cold could prove fatal. Sadly many do not survive their first year of life*.

Like all rare diseases it is very difficult to attract research funding for Myotubular Myopathy, despite the severity of its impact on the children affected. The Myotubular Trust has been set up therefore to raise those funds and begin the process of finding a cure for the condition